talkingaboutcancer.com

I just finished a fabulous book written by Lori Hope, a lung cancer survivor, entitled help me live … 20 things people with cancer want you to know. Lori wrote the book based on the results of a survey she conducted and the stories of many, many people whose lives she has touched through personal relationships, interviews and her extensive speaking engagements. As a cancer survivor herself, she has had a front row seat to many of the experiences she writes about, and this personal perspective gives the book a very special intimacy.

Notionally, the book is written for the family, friends and acquaintances of people with cancer but, as I read it, I could see my own experiences as a cancer patient and survivor mirrored in the stories of so many others. In so doing, it gave me strength from knowing that I am not alone.

Lori is one of the good people who has chosen to turn her own experience with his horrible disease into a positive force for helping all of us to cope and to live. I highly recommend this book to everyone touched by cancer. Check out Lori’s site at www.lorihope.com.

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Today, I met with the radiation oncologist to talk about “salvage” radiation therapy (hate that expression) to try to kill the cancer that has recurred in my prostate bed. Odds are that this is where it is, but I don’t know for sure. Either do they. So they’ll just fire the particle accelerator at me and hope they get it all. It’s a lot more refined than that, but the outcome is the same - I’ll only know for sure if my PSA goes down and doesn’t go up. I’ll be starting in a couple of weeks for 33 consecutive days.

I kind of knew this was coming but it all seems so much more real now. I’m stressed to the max just cuz it was such an intense day. The shock of a recurrence is one thing, and I’m feeling good that I’m doing something about it, but now I feel like I’m really living with cancer, or at least starting too. I think it’s going to be a long haul and I don’t know whether time will make it easier or whether it will accumulate. I guess we’ll see. I need to make time to absorb it all and to adapt. I really should be doing things like yoga and meditation and would welcome any other ideas or advice.

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When we are stricken with cancer, depending on which cancer, its stage, etc., we are faced with many choices. Choices of doctor, choices of treatment, choices to get second (or third or fourth) opinions. They are all terribly important choices that we have to make at a time when our lives have been turned upside down, and each of us will approach these choices in a way that is uniquely us. Many people are very analytical and will vacuum up as much information as possible in order to make the “right” choice. Others feel much more comfortable putting their faith in their doctor(s) because they don’t feel qualified to make some of these choices on their own. I think others may just get dragged along, hoping for the best.

Cancer is a game of numbers. Treatment options are based on statistical, historical studies of large numbers of people. If you happen to fall neatly into certain categories it may seem obvious which way to go, but we are all unique and no one can predict with certainty what will happen to us based on our choices. But we have to make them, because not choosing (or choosing to do nothing) is, more often than not, a death sentence. So we choose our doctors, we choose between radiation and surgery and chemo. Sometimes we choose when to start. And then we throw ourselves at the mercy of those who know what they are doing and who have our best interests at heart.

It is very, very important that we never second guess these choices. While you may be able to stop a course of therapy, there is really no way to reverse or go back. And since we cannot predict the future with any degree of certainty, we certainly can’t answer the “what if” questions. What if I had radiation instead of surgery? What if I had opted for high-dose chemo? What if I had insisted on adjunctive therapies? Maybe you have choices going forward, but you can’t undo the choices you have made.

So make your choices with the best information you can, with the strongest intent you can muster, and put your faith in those you trust. Its the best you can do. Never look back or second guess those decisions and choices. There is nothing you can do about it and it will tear you apart. You have enough to deal with without blaming yourself for “wrong” decisions. And if your original choices don’t work and the cancer recurs or spreads…… well, you did your best, and now you need to make new choices. Take what you have learned and move forward.

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After 5 years of undetectable PSA readings after my Prostate Cancer surgery, my annual blood test showed that it’s back. I was supposed to have really good odds of being cured, but I guess I fell into that small percentage. Now I’m looking at other, different treatments like salvage radiation therapy (what a name!) and hormone therapy. What I don’t know is whether these treatments will be able to get it once and for all or just slow down the inevitable. Life suddenly isn’t looking as long as it once was.

How do you handle something like this? My first diagnosis 5 years ago was hard enough, but at least I did something and thought it worked. This is something different. I’m not going to die tomorrow but, instead of living as a cancer survivor - wounded but back on top - I’m now going to be living with cancer and treatments and doctors and side effects. It just seems so big. It’s always on my mind. I thought that I would be able to handle it better this time around, but it’s damn tough. I have good days but I have some really nasty days. I’m going to attack this thing aggressively and that feels good but even though I am doing something, it only helps a little.

I have hope and I have a loving wife to shore me up. She tells me it’s okay to cry.

Posted by Doug

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